Week 8: ileostomy reversal

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Regular Member

Date Joined Oct 2007
Total Posts : 55
   Posted 11/25/2007 6:19 AM (GMT -6)   
Well, since i've been posting my terrible times i thought i would be even-handed and post my not-so-terrible times too. I'm 3 days from m y 8 week anniversary. I should point out that I didn't get my ileostomy b/c of UC or Crohns but b/c of a reproductive disorder, endometriosis, that invaded my colon resulting in reanastomosis and hemorraghing episodes postoperatively. Oh yeah, and a rectovaginal fistula (goooooo 3rd world country Camille!) So, I've had a little different experience except that so much of the pain annd misery associated with UC and Crohns were a part of my life for 15 years. Colon bad is pretty much colon bad.

Anyway, I may have picked up a pound since my reversal, which would bring my total weight loss to 44 pounds instead of 45. I've still very low energy. I drink pepto bismal and eat 8 tums a day to stave off diarrhea. Weekly colorectal visits. I've anal incontinence and cannot control my anal sphincter so there has been a lot of skin injury due to fecal matter just eating away at the poor hapless hole. I spend about 2 days a week dedicated to wound care of my anus - always following the day when my bowels simply will not stop pushing soft or liquid matter through. Those are the worst/hardest days, Thanksgiving was one, and I hang out in bed on my side and soak gauze in domboro until the skin seems to heal enough for 5% lidocaine, hydrocortisone and hydrogen peroxide gel (in reverse order). Then I sleep - marathon sleep.

I'm taking 7.5 mg Percoset in half-doses and valium twice a day to relax my soft muscle tissue. The 1/2 dozen surgeries this summer left me with a tendency toward raging nerve pain (they all say the nerves are mending and that's why it hurts so much) so sitting down for long periods is icky. I am currently on the floor of my bathroom, peppermint tea at my side, waiting for the next "movement." They take about 6-8 hour to complete. I can move around the house, but I go outside at my own risk. It's painful.

In one of my more contemplative (read: drugged) moments I wondered who had more patience, me or my intestines. I posed the question to my team of surgeons and they smiled and said "your intestines." Guess I've got a ways to go.

Thanks for listening/reading/and all the support. Just needed to get it off my chest. smurf

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 11/25/2007 10:25 AM (GMT -6)   
You have certainly put up with MORE than your share... I wish you better days ahead. You can talk/type to us anytime... some of us read along and shake our heads, yep been there. I can't say that with your experience. You are quite the strong person to have had to handle this whole ordeal.

Better days ahead. I will certainly be thinking of you.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Veteran Member

Date Joined Jul 2006
Total Posts : 942
   Posted 11/25/2007 12:43 PM (GMT -6)   
My heart breaks for you. Your post reminded me of the days when I was either sitting on the toliet applying cream after cream or running to a hot bathtub praying for some relief. I am so sorry you are having to live this way and that your Thanksgiving was such an awful day. Can your Drs reverse you back? You cannot live this way! Can you opt of the ostomy again? Is there anything out there that can help you? You are doing everything I can thihk of and I do not know of any bag of tricks other than taking a pain medication and trying to sleep through the pain.

Please keep posting. It really helps to vent.
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot

Regular Member

Date Joined Nov 2007
Total Posts : 128
   Posted 11/25/2007 12:50 PM (GMT -6)   
I'm really sorry you're having such a tough time. Stories like yours are what make me so leary of having a reversal. I can't imagine the pain and discomfort you're in. You said you're incontinent, did you ever have the anal manomatry testing done to check the sphincter muscles? My surgeon is wanting to do that test to see if the muscles are well off enough to even have reversal. I hope things get better for you soon. Keep your head up and stay strong!

Regular Member

Date Joined Nov 2007
Total Posts : 272
   Posted 11/25/2007 3:47 PM (GMT -6)   
Stomagirl, i can symathsise with you. I to had anal incontenance and it was the worst thing ever, i am scheduled for my reversal at the end of jan and i'm terrified that i am still going to be incontenant, my surgeon said my anal sphincter would be repaired during the op but it would not be 100%, but hopefully let me hold of to reach a toilet, soooo fingers crossed!!

Ash, i am having my anal manomatry testing done over 3 wks with a physio, i will have to travel into Glasgow for this as the 3 hospitals local to me don't do it but as long as i get it done, it's like crossing the T's and dotting the I's before my reversal, so i hope my muscles have become strong enough to get my op!!

Regular Member

Date Joined Oct 2007
Total Posts : 55
   Posted 11/25/2007 5:38 PM (GMT -6)   
Hi Everyone,

Thank you for the replies. They have been so heartenening. I wrote my message at 6 am and around 1:00 pm my boyfriend (a surgeon) and I began a enema process to empty my rectum. It was enlightening. My bowels are fine, my anal sphincter would actually work a little IF my rectal sphincter contracted and pushed material down.

I never had any testing done of my anal sphincter because my ileostomy was to prevent gynecological infection after I had a rectovaginal fistula open up (a tear in the tissue of my vagina and my rectum in the same place so I had fecal material coming from my vagina for a few days).

I will keep all updated. I am exhausted, but as I used to brag (oh those halcyon days) while an ostomate "I am not full of crap" anymore. Looks like the enemas will have to be an early-morning, daily part of my routine.

I can't weigh in on whether to get a reversal or not. There are the advantages - no baggies. But right now, in my life, the disadvantages are too many to name. I've read (on this board) of people who had phenomenal success, but I think any operation means your playing around with very fickle material. I also do not have any sensationin my bladder, so the rectal stuff is probably tied to that nerve damage which I can only wait toheal on its own.

Thanks so much for being my listening/reading ears. It's a lot sometimes and I don't know who to talk to. It feels safe to have someplace where other people know what I don't know how to say.

Regular Member

Date Joined Oct 2007
Total Posts : 55
   Posted 11/28/2007 7:34 PM (GMT -6)   
Thank you everyone. I have doctors appointments tomorrow. I am asking to be hospitalized for bowel rest throughout the weekend and a temporary colostomy next week then to be treated as a colo-rectal patient with full workups instead of a gyno patient with a colo-rectal problem.

I will keep all updated. I'm hoping to enjoy Christmas with my colostomy and have a life again. Thank you all sooooo much for the support and assistance!

Camille yeah
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